Frequently Asked Questions Find everything you need to know about coeliac disease, the gluten free diet and the work we do.

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I don’t have diarrhoea as a symptom, does that mean I don’t have coeliac disease?

Coeliac disease is known as a 'multi system' disorder' - symptoms can affect any area of the body. Symptoms differ between individuals in terms of type and severity.

How do you decide on what research to focus within Coeliac UK?

Everything we do is to support our Members and in particular the strategic aims of the Charity. The research we carry out ourselves is usually generated to determine a policy position on which we can campaign for improving the lives of people with coeliac disease.

If I have coeliac disease, are my children more likely to also have it?

Coeliac disease does run in families but not in a predictable way. Around one in ten close relatives of people with coeliac disease (for example, father, mother, son, daughter) will be at risk of coeliac disease.

So if you have a relation with coeliac disease you should be aware of the symptoms.

What is Awareness Week?

This is our busiest campaigning time where Local Voluntary Support Groups around the country host events which feed into a national picture of campaigning. This translates to people holding events focused around a particular theme, as well as, amongst other activities, writing to their MPs, speaking to the media and fundraising for us. Usually Awareness Week is in May, and lasts from Monday to Sunday.

What is the Eating Out campaign?

This campaign focuses on the food service sector, so those who provide food in restaurants and eateries around the country. We want to make eating out easier for people with coeliac disease, which means access to safe gluten-free options that are clearly marked on menus. We have been working with this sector and raising awareness through our Gluten-free Chef of the Year competition, to get chefs and catering college students to plan gluten-free menus. We’ve also worked with industry specialists and created education tools to work with the sector in getting gluten-free dishes onto menus.

What is the Product campaign?

We would like to see better availability of gluten-free food in supermarkets and on prescription. There have recently been developments in this sphere as the international standard on gluten-free food has changed. We have been campaigning to make sure that the change to the standard is a positive change for people with coeliac disease. We work with manufacturers and industry leaders, such as the British Retail Consortium, to ensure that we can find a path which works for industry leaders, as well as people with coeliac disease.

What is the Health campaign?

The medical profession has so far, under recognised coeliac disease. It is not routinely tested for at the moment, and we are campaigning to change this. We would like to see coeliac disease better recognised by the medical profession so that people with symptoms of the condition are picked up more quickly and diagnosis improves. By talking to healthcare professionals about coeliac disease and the problems you face, we hope to improve the situation. We are currently carrying out a Diagnosis Survey to help us with this campaign, as well as running a petition to ask the government to improve diagnosis of coeliac disease. We are also working with healthcare bodies to improve GPs’ knowledge of the condition. We have already made progress with this campaign as we saw NICE publish guidelines on the diagnosis of coeliac disease in May 2009. This was a direct result of a campaign we ran in 2006, and proves that whilst campaigning can be a slow process, it does work.

If a product says it is gluten free on the label, but is not listed in the Food and Drink Guide, can I eat it?

Yes. There is a strict law that covers the use of the labelling term gluten free. When you see gluten free on a label, you know these foods are suitable on a gluten free diet.

Are there any incentives for pharmacists taking part in the Community pharmacy supply of gluten-free foods scheme?

Introducing a pharmacy led supply scheme allows better stock control of gluten-free foods for pharmacists as well as providing a more flexible service to improve the patient experience.

Pharmacists and GP dispensaries are paid a service charge at six monthly intervals for each patient who accesses the service. When the scheme in Northamptonshire was introduced it was run as an Enhanced Service with funding for this element of the contract coming from Primary Care Contracting budgets.